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Would you take a genetic test that could lay bare your destiny?

By Rowan Hooper

You have a 50-per-cent chance of carrying a gene that will radically change and then destroy your life. Do you want to know if you have it?

This decision is at the heart of Plaques and Tangles, Nicola Wilson’s first play, on now at the Royal Court in London. The protagonist is Megan, brilliantly played by Monica Dolan, who we see at various stages of her life.

Her mother has died of early-onset Alzheimer’s, a rare type of the disease, and Megan faces a dilemma that is becoming more and more common. Does she take a test that might lay bare her destiny?

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Talking about it with my colleagues, some were quick to say they definitely would take the test. Others said they definitely wouldn’t. To me, it didn’t seem an easy decision to make, and in any case you can’t know how you’d actually react until you are in that position for real.

If you take the test and find you are negative for the gene, you have your life back. If you test positive then you have time to prepare – to prepare to lose your mind.

“Knowing you’re going to develop the disease might just blight the years of lucidity you have left,” as Barbara, the genetic councillor in the play, puts it.

Genetic counselling

The reality is that genetic testing for conditions like Alzheimer’s is becoming common. If you are at risk, like Megan, because a parent has a disease with a known genetic component, then in the UK, the National Health Service will offer you a test and often counselling, too.

So as a subject for a play, it is timely. Other writers feel it too. Lisa Genova, author of Still Alice, which was made into a film last year starring Julianne Moore as a woman with Alzheimer’s, has a new novel out. Inside the O’Briensis about a man with Huntington’s disease and the struggle his children face about deciding whether or not to get tested.

It may sound impossibly gloomy, but Plaques and Tangles is so well written – and performed – that it is more fascinating and moving than weighty and depressing.

But it also drives home the horror of the disease, of what happens to a person when they lose part of themselves. This can be hard to appreciate when we encounter people with dementia but don’t know their personal history. Wilson’s approach shows people at every stage.

Not coincidentally, Wilson gives a shout-out to one Auguste Deter, who in 1901 went to her doctor complaining she had lost herself. Most people have never heard of Deter, but when she died a mass of plaques and tangles was discovered in her brain. The doctor’s name we do remember: he was Alois Alzheimer, but Wilson’s point is that we ought to keep in mind the person who was lost.

At one point in the play someone asks, “Are we architects of our own destiny or prisoners of our genes?” Without a cure, we are prisoners, to some extent, but the chance of being tipped off through genetic testing about the kind of future we might face offers at least some measure of control. I think that’s the choice I would take.

I asked Wilson whether writing the play helped her decide what she would do. “I still don’t know,” she says. “Is knowledge a good thing or would you wake each morning destroyed by it?”

This moving and thought-provoking play has certainly encouraged me to ponder it.